Emotionally squaring up to cancer
These are just some suggested subject areas for your hints and tips as to how to retain identity and sense of self…different ways to manage a situation.
Worry; Anxiety; Loneliness; Withdrawal; Feelings before/during/after treatment; Beginning to recover; Uncertainty; Anger; Resentment; Limited life; Mental health/ capacity.
When treatment has finished..
Don't be surprised if you (and your family too) feel a bit deflated when the chemo has finished. Even though it is great when treatment's over, sometimes it can also feel as though your "safety net" has been taken away, and it can take time to get used to life, without treatment!
Joy in living!
Fix your eyes forward on what you can do, not back on what you cannot change, and keep your heart open to your dreams. For as long as there's a dream, there`s hope ... and as long as there`s hope, there`s joy in living!
I was once told you are never too old for Disney, and the truth is, a little bit of Disney made me feel slightly happier every day!! Try it :)
It makes 'not a jot' bit of difference whether your male, female young, old, patient or carer... it’s okay to 'fall apart' for a little while and yet it`s one of the hardest things to do! I`d like to reassure anyone struggling that you don’t always have to pretend to be strong and there`s no need to constantly prove that everything`s going well! We`re talking liberation here folks - so cry if you need to, because it’s healthy to shed your tears and the sooner you do, the sooner you`ll be able to smile again!
Identify the pattern
To be honest, the response to chemo seems so individual it`s hard to offer any tips on it. I think you just have to go along with it and keep telling yourself you`ll come out the other side! It helps when you can recognise a pattern and you`ll then get a good idea when you`ll start feeling better after each chemo cycle! Keep a diary of side effects because this will also help identify this "pattern" and you`ll also see you`re getting through it!
Reaching its limit!
Self help groups can be enormously helpful but the nature of our disease is that we`ll see friends die! This can be quite overwhelming, especially when you`re in the fight too!
One year, several of my friends died which tipped me into a reactive depression :( So my advice - don`t be afraid to protect yourself and turn down offers of friendship if you feel your capacity for sick friends is reaching its limit! You need to keep some energy for you too!
Managing your cancer!
There are some types of cancer that can be managed but not 'cured!' I`m one of those people... and I am having maintanance chemo to keep my cancer under some kind of control!
However, I wanted to let you know that you`re not fussing if you want to checkout each new pain or symptom! Thinking that 'this is all there is' doesn`t help you enjoy what you have - here and now! So tell your team, and allow them to work WITH you when it comes to managing your cancer!
Scared by scans?
Ok... I admit it! Before a scan I`m paralysed with fear (but can`t quite find the words to explain how awful I feel) MUGA, PET, CT - all scans fill me with dread! Even when they`re done, I can`t sleep until I`ve got the results! (Are you`re getting the picture?)
Anyhow, the thing that I`ve found helps me... is contact (through a gentle touch or friendly word) A reassuring pat on the shoulder as I slide into the scanner works wonders... and I recommend that if you feel the same way, tell your nurse!
Also, now that I`m an "expert" on scan techniques, I`ve noticed many technicians are worried about talking during scans (for fear they`ll encourage the patient to move and ruin the picture!) Thing is, by talking to you during tests, especially when you`re in a scanner and can`t see anyone, the technician is actually being really considerate! I think they must be doing so many scans every week that they forget what it must be like, especially for newbies, and at least if you tell them what you need, you`ll know you`re not alone!
If you`re needing scans, ask how many will be taken (gives you some idea how long the proceedure will take) and ask to be given notice inbetween each one! Promise to keep still (and don`t try and talk back because you WILL move a bit) and I hope my advice helps pass the time and stops the whole proceedure feeling claustrophobic!
Don`t compare yourself with other people with the same illness! Everybody`s different and by comparing symptoms, you`re likely to scare yourself (shitless)! It`s good to talk to others in similar situations - for helpful hints and tips, but comparing symptoms isn`t healthy and can make you frightened!
So my advice is exercise abit of savvy and protect yourself... after all, 'this' is already hard enough!
Seeking a second opinion...
When I was told I`d got cancer (stage 4) and that things were not looking good, I decided to seek a second opinion - and I am really glad I did! Let me tell you why (without getting into too much detail about my illness) Getting a second opinion helps relieve yr mind and resolve any doubts you`ve got, one way or another! It doesnt matter if its just to get reasurance, or know that a major mistake hasn`t been made, or, as in my case, that all options have been covered!
Don’t be embarrassed about asking for a second opinion or think that you`ll make your doctors angry. They`re perfectly acceptable, and many consultants/doctors are happy when their patients seek second opinions... especially when the original diagnosis is usually confirmed, and you`re then more prepared to follow prescribed treatments.
For me, getting a second opinion gave a slightly different perspective that helped everyone’s understanding.. especially mine!
It's emotionally empowering to be proactive!
When you`re diagnosed with cancer, what happens next, has got to be a WORKING relationship between everyone involved. However, YOU have the lead role!
Having cancer is a big deal, and you need to have confidence in your team!
Ask questions, find out about treatment options, see your x-rays or scans, to get a better picture of your status!
AND... consider a second opinion if you have any doubts and, if you feel you haven`t developed a good relationship with someone in your team (which sometimes happens as we all have different personalities) have the confidence to talk it through with a member of your team, and see if any concerns can be resolved... otherwise, you may need to consider finding another doctor!
I've had a think about the concentration issue that many of us experience...
I'm not sure I managed to concentrate on much during that time, but certainly audio books were a godsend, especially in the middle of the night when I didn't want to disturb anyone by putting the TV on!
There`s some good books available and rather than buying them, they`re also available through the library (although I like having my own!)
In remission... but feeling down :(
Once you`ve finished treatment, and in remission... its perfectly normal to feel down, as for months/years, you`ve been giving every fibre of your being to fighting your cancer!
You`re exhausted (and probably abit tearful!) and all the feelings you`ve held at arms reach, in order to cope, will now float to the surface, as they didnt just disappear... they were only placed 'on hold'!
It`s really important to allow yourself to process what you`ve gone through, in order to find a place for this experience, in your 'filing cabinet of life'!
I think there`s an expectation that when treatment has finished, everything is 'fanfares and fireworks', however the emotional journey is still ongoing and can take many months to feel 'normal' again!
Dont be hard on yourself if you`re feeling down or "bad"! Grab a large box of tissues and chocolates of choice, put on weepy movie, thump a cushion and let it all out! Then blow your nose... and go restock the tissues & chocolates so you`re prepared for next time (just in case) and one day, you`ll realise they`re out of date and the tissues have not been opened!!
This is time to get prepared as best you can. I think it may help to sit down and write a list of all the practical, emotional and spiritual support you can think of and then check out who or what is available to meet those needs
Nip things in the bud..!
When your treatment is finished, you`ll probably be asked to attend ‘follow up’ clinics. These are to keep a close eye on how you`re doing because the side effects of treatments can sometimes cause changes in the way your body works, and may be a problem if not picked up on, so it`s important to attend! Also, because you`ve got used to having lots of things going on because of having cancer, life after cancer can be a bit scary in trying to get “back to normal,” so follow-ups can help with these feelings, too!
Depending on your situation, your follow ups could be every week to every few months, and eventually your appointments will be every year… get the idea?!
The reason I`m writing this is to encourage you not to wait between follow ups if you think something isn’t right! I`d a few problems once I was “free”, and didn’t see the point in going to the doctors as it was just a cough and I was “booked” to see the clinic in a few weeks time (and I was just getting used to having time away from hospital and it felt good!) It was at follow up, when they did my routine tests and scans that showed up one of the chemo drugs had irritated the lining of my lung and I`d got a type of pneumonia! Should`ve contacted them earlier as I may have avoided being readmitted.
So my advice, always “nip things in the bud” if there`s ANYTHING wrong, rather than soldiering on, because a great warrior will make use of what is to hand and follow ups are there to help you in your cancer battle!
The week before chemo...
I think that week before chemo is absolutely one of the hardest, but soon you’ll know the routine, and you’ll see that day-by-day it's possible to get through treatment. I’m not a professional, just someone who has done chemo too – but can say this from personal experience: don’t hesitate to talk about your fears and ask for help. Sometimes that release is the best medicine for hard times.
And try not to forget, though it can be hard, that chemo might suck, but it’s on YOUR side of this battle!
Lack of motivation
I wasn’t noticeably depressed after treatment, but definitely had days I couldn’t be bothered with anything.
Looking after myself and preparing a meal was difficult as I didn’t have the motivation to eat!
I think if I hadn’t recognised that I was isolating myself, I would have become really depressed and it was thanks to some good friends who risked upsetting me, that jolted me out of this frame of mind! They encouraged me to start doing more.
I found it helped to move around and not stay in the one place for too long. Listening to the television and radio, especially music, was good, and forcing myslef to get out and about began to get easier the more I did it!
Find something, anything, that you can look forward to (even if it`s just a visit to the library!) Look at evening/daytime college classes (the fee may be reduced because you have cancer) or treat yourself to something nice from the shops. (My niece was getting married so I started to book things to do into my diary, in preparation for her big day, and that helped)
Lack of motivation is normal but isn’t healthy, and finding something to look forward to help gives reasons to keep going and I hope gives you reasons too!
Not sure if any of this is any good but hope it helps x
Don’t bottle up your emotions
Being diagnosed with cancer I was first really shocked and scared.
After coming to terms with it, I started to see the positives rather than the negatives of having cancer: it brought my family and friends closer! One thing that really helped me was just screaming into a pillow. It helped me release tension. If you tend to bottle up all your emotions, try writing how you feel on a piece of paper.
The biggest piece of advice I can give, from my point of view, is keeping laughing! Honestly, laughing is the way forward when it comes to cancer! If you don’t laugh, things soon get on top on you, so try not to take it all so serious, however hard it is!
I learnt this the hard way…I got miserable and it all got me down, but whenever my family come and made me laugh over the silliest of things, I instantly felt better!
I knew I could get through it, if I kept laughing…. however hard it may have got.
Personally when I was diagnosed I had very mixed emotions. Obviously I was scared and upset but in a way I was relieved that I could put a name to this thing that had been making me so ill. I finally knew what I was fighting and could deal with what having cancer would entail.
My family/ doctor was waiting for me to break down but I just figured I needed to stay strong. The best thing to do is be honest about how you feel if you want to cry then cry, there is nothing wrong with a good old blub!! Also remember that your illness will effect the ones closest to you as much as it effects you!
I love basketball but I`m too tired to play at the moment. Cancer has made me tired but I still sit and watch and laugh and cheer with my friends. "Game on" before each match means "bring it
This is now my game on...for life! So I write my list of things I would like to do and enjoy whatever I can. It's my life… and I'm living it!
I have been given a life limited prognosis. Don’t feel sad, because right at this minute I'm having a blast! I'm tired but otherwise still have enough of my senses and plan to do as many things as I can.
I had some problems because I use a wheelchair but the care and support I have received to keep me doing what I want to do, has been great, so a big thank you to palliative care in the community and my doctor.
You know, when first given the news of cancer, one of the first emotions I felt was relief! At last they knew what was wrong and I was able to do something about it; treatment would start in one form or another.
It was after that first relief that I became a bit frightened, irritable and frustrated that this was happening to me, After all, why me? I like to be in control and having cancer made me feel very insecure. How was I going to stay strong, even more important, am I a strong person? It feels like a roller coaster which can be really confusing because my feelings weren’t consistent! I think the way I get through it is to keep focusing on one day at a time… and to not apologise for how I'm feeling.
The big squeeze
I sometimes feel squeezed into a cancer box! It's as if my energy, thoughts, even my breathing, gets all squeezed up by cancer!
My consultant suggested I speak to a psycho-oncology nurse because those feelings made me anxious. This nurse was specially trained in helping people cope emotionally with cancer and I found it really helpful to talk to someone neutral about how I was feeling. She did some relaxation techniques with me and I saw her probably six times over the course of my cancer treatment.
I still had moments of worry but was better able to deal with it. If you are experiencing the same, I would recommend you ask your team if there is someone you can talk to, too.
When coping with cancer you may feel some powerful emotions. It could be shock, denial, guilt, fear, anxiety, worries, depression, panic attacks, etc. You could experience one or more...just in the space of a day!
If you are experiencing any of these, do try and talk to your nursing team. You don't have to bottle them down understanding that you are normal feeling this way can help you cope. Depression is not just low mood. It can cause all sorts of changes that make it difficult to function. It is always a good idea to get advice, because there may be things that can be done to help you!
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